What If Disability Rights Led Innovation First

“Inclusive” is one of those words everyone loves to say and almost nobody builds all the way through. We sit down with Jamie Cooke, Executive Director of Inclusion International, to get practical about what inclusion really takes for people with intellectual disabilities and their families across more than 100 countries, from local realities to global advocacy at the United Nations. Along the way, we unpack the tension many of us feel inside the disability community: when we splinter into smaller camps, we risk weakening our ability to win the changes that actually make life better. 

We also tackle the unavoidable topic of artificial intelligence and accessibility. AI can help simplify complex text, extract meaning, and turn dense documents into usable information, which can open doors in education, civic life, and work. But Jamie names the risks clearly: machine learning systems inherit bias from incomplete data, and disability organisations often lack the capacity, skills, and resources to shape how these tools are built and deployed. If we do not build that capability now, “innovation” can quietly scale exclusion instead of access. 

From there, we go straight to disability inclusion in the workplace and what corporations need from us beyond a moral argument. We talk about long-term partnerships, building rewarding careers instead of token jobs, and why disability organisations must “walk the talk” by modelling inclusive hiring and leadership development internally. We end on what it will take to avoid tokenism while still building a credible pipeline of next-generation leaders, plus why better disability data is essential for real accountability. Subscribe, share this conversation, and leave a review so more people can find it and push inclusion forward.

Transcript

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Neil Milliken (00:01)
Hello and welcome to AXSChat I'm delighted that we're joined today by Jamie Cooke. Jamie is the executive director of Inclusion International. So welcome, Jamie. It's great to have you on the show.

Jamie Cooke (00:12)
Thank you.

Neil Milliken (00:14)
Can you tell us and tell our audience, because we're an international audience, bit about Inclusion International, what the organization does and which groups of people that you engage with in terms of the dispersing community.

Jamie Cooke (00:31)
Absolutely. Thank you. And it's a great to to join you all today for this conversation. So Inclusion International is the global community for people with intellectual disabilities and their families. So we operate in about 115 countries, about 200 member organizations. At the core of everything we do, as I say, are organizations led by people with intellectual disabilities themselves andor their family members.

But we also have service providers and other organizations who are members and support the work that we do. As I say, we operate across five regional structures. We have two very formalized, so Inclusion Europe and Inclusion Africa. And then we also have MENA, the Americas and Asia Pacific, which probably could do with a bit of looking at given that covers about half the planet just in that that one region there. But we undertake research, policy work, advocacy, we work

from a global level at the United Nations down to very local levels with our members and participants there and across a range of of different topics. Anything really that is driving that sense around inclusion, but particularly I suppose around the education, around the care and support agenda, around employability and around other areas that we really see impacting and excluding our members and the people we serve from the wider society and and economy a whole.

Neil Milliken (01:53)
Great, thank you for that explanation. Deborah, I know, has a question, so I'm going to hand it straight over.

Debra Ruh (01:58)
Well, and welcome to the program, Janie. I I have been a fan of Inclusion International for a long time. I also am blessed to have a daughter that's 39 years old that has Down syndrome and autism. So she has a dual, as she's become an adult, she's gotten a dual diagnosis. But the one thing that I just love about Inclusion International is that you are taking all of our community from the perspective of intellectual disabilities together.

sometimes I see like every other, you know, everybody else, sometimes I see our communities, the intellectual disabilities communities infighting a little bit. It's like, no, everything's about autism. No, everything's about and and it's just so much broader than just autism down syndrome. I know that you know, there are other conditions that are included in there as well.

Also often I know that the community of the intellectual disabled, you know, community are are left out of work in different ways. I know that you and I had a a really I found it a very, very powerful, powerful conversation about whether or not when when I say your CEO should have a disability, and I've had the Down syndrome community come back and say, Are you saying, Deborah, that you know

That we need to put somebody with down center in here, whether they're qualified or not. And I said, absolutely not. So I was I just wanted to start with some of those dynamics. I love that you have 200 organizations involved, but just our part of the community, we also have these challenges that can bleed over to the rest of the community too. Thank you, Tammy.

Jamie Cooke (03:48)
Hundred percent. And I I think, you know, we we're in challenging times for lots of different reasons. And I think that that splitting between communities or the infighting, as you say, sometimes can recognise very important differences or areas that we do need to to be sensitive of and respond to, but also run the risk of of diluting our chance to impact and to drive real change. And I think one of the things I've seen, I I I've been lucky to to serve as as executive director for just over a year now.

and it's been an incredible honour and an incredible opportunity to come into this community, is that I think particularly when we look at intellectual disabilities, traditionally we are seen as a small part of a small part of the wider population. And so maybe we'll get to us eventually in the end when we've done other things. And actually what we have is a spirit really vibrant, connected community. And yes,

proportionately maybe small, but actually as a place where you can have the biggest impact because anything that's introduced to benefit people with intellectual disabilities and their families benefits society as a whole. And I think that's been really exciting to start to see where some of these interactions and intersections are so important and so crucial. And I think for for us, particularly it's inclusion international, it's also why having at that absolute core of what we do. So we are an organization of persons with disabilities, but at the

core is that balance and that importance of people with intellectual disabilities and their families. Sometimes the two communities can be set up almost in in opposition to each other within that part. And we recognize how important it is to look at those wider family structures, the the support and the challenges that that are there for parents and siblings and other family members within that work. So I agree with you. I think it's so important that we we see these

opportunities for collaboration, these opportunities for bringing together different parts, not just of of intellectual disability and and euro divergence, but also across the disability movement as a whole to have maximum impact where we possibly can.

Antonio Vieira Santos (05:54)
Welcome Jamie. I

Jamie Cooke (05:56)
Thanks.

Antonio Vieira Santos (05:56)
couldn't, have, what progress can you identify that we're making at the moment in terms of people with learning disabilities? Do you see anything happening in different geos? So I'm very trying to be positive here. What are we winning and what are we achieving of positive?

Jamie Cooke (06:21)
Absolutely. And I I refuse to be anything other than a an optimist, even if it it has to have a healthy degree of scepticism or or or reality to it just now. I think we're still seeing, firstly, we we are in overall a a place of progress compared to where we were. You know, as we celebrate this year the anniversary of the UN Convention on the Rights of Persons with Disabilities, we look at the impact of, you know, the Americans with Disabilities Act, we see some of the progress that's been made. We have the movement has come a long way.

over the years. And I think there's much to to celebrate there, even in amongst challenges. But I think a few things I'm seeing where we're making progress, but there's still obviously further to go. One is around some of the kind of uptake of language. Now there's a a danger when language is taken up if it's not followed up with action, because then it just becomes a way of of covering other behaviours. But I was really intrigued earlier this year to be at the launch of the Global Education Monitoring Report, which came out of UNESCO.

And they were talking there, you know, every single government representative who've got up said we are committed to inclusive education. Now, I think we as an organization would challenge the delivery of some of that, but at least the recognition of moving those systems towards a more inclusive approach, I think is is something that's to be be welcomed. I think we're also starting to see some real changes around the what I just said a minute ago about that idea of the the community being

the small part we come to last, as opposed to actually where we should be starting interventions and innovations because the opportunity for impact is is so big. And so when we're starting to talk to partners, whether that be in governments, whether that be in businesses, whether that be in in wider society, actually starting to recognize that there's there's a real chance to to drive some change within this community. And I think that's really exciting to see.

And I think we're seeing out there some examples of where businesses and and kind of employment is starting to recognise and change a view of people with disabilities in general, but people with intellectual disabilities as being a challenge or a burden or an impossibility to actually an untapped resource, an untapped talent pool. And I think that becomes quite exciting in terms of that potential that we see on a day to day basis of the people we serve.

But actually starting to get that out into to the wider discussion there. So I think there's much that we can be concerned about in the world today, but I think we are still seeing a direction of travel that we are committed to ensuring continues that is about building on that space for positivity, for recognising the values that people within the community bring and offer to society.

Neil Milliken (09:06)
Yeah, I think it's always good to remain positive. It's so easy to not be in times of significant change and challenge.

I'm going to ask the inevitable AI question, because no one can talk about anything without AI these days. What do you think are both the positive and the sort of potential challenges of AI when it comes to the intellectual disabilities community? Because in some ways, you can see, certainly at my monster, sort of

the neurodivergent community that share some of the same challenges, you know, in terms of reading and comprehension and stuff like that, that the AI tools actually present a way to simplify text, extract meaning and so on. But at the same time, sometimes getting the best out of them requires significant knowledge, money, yes.

And also, I think about the spread of misinformation. think that these are, in my mind, are some of the sort of challenges and opportunities for the IDD community, but maybe you see others as well.

Jamie Cooke (10:38)
Yeah, no, absolutely. I mean, again, kind of going with my optimistic theme, I think with AI, when you vis when you see the power of the tools and the the opportunities that are offered there, I think there's huge potential. And for for the community we serve to be able to have, as you say, ways of having materials interpreted or made more accessible, of condensing information into a way that actually people are able to start to access for opening up

ways of developing tools that perhaps, you know, when you look at some of the ways you can you can develop apps and other kind of products through AI tools now that weren't as accessible before, I think that suddenly starts to give opportunities for people with intellectual disabilities to utilize some of the creativity and the ideas that they possess, but maybe utilize some of these tools in a way to do that. So I think there's lots to to AI that's incredibly exciting. and I always think back to when

I used to work for a group called the RSA, which is a an old think tank based site of London. And I remember we set up a project when I was there with a cohort of people with learning disabilities in Scotland who joined as Life members, Life Fellows of the RSA. It was the the best project I was ever involved with during my time at the organization. And they all came in with incredible projects that they were working on. But I remember having a discussion where they fed back on the journal that was produced by the organization. They said, look, we're life fellows, we want to be active.

participants. When we go to an event and we're sharing a glass of wine with our fellow fellows, we want to talk about what's in the journal. However, it's in inaccessible language, it's difficult. Would it be possible to get an easy read version of the journal produced? And when I explored that with the publishers, they felt it wasn't the nature of the the the articles and so on. And when I went back to the group they said, well look, what would be really helpful actually is even then could we just introduce bullet points at the beginning of each article that have the key points, the key discussion points.

and actually what was fantastic about that was the people who loved that introduction the most were actually myself and other staff members who didn't have the time to read through every piece of article that was was written. So there again was an an opportunity in written form that showed that that inclusive, accessible approach benefited everyone. And I think that's where there's a similarity to some of the uses of AI in a positive way, which is taking some of these dense, difficult documents that have a real impact on people's lives.

And giving them tools that can help them to access and understand that, or indeed allowing them to start to create, as they say, materials, apps, and so on of their their own. I think what I would say about the challenges, I think one of the biggest challenges, and and this is one that is common to other underrepresented communities, is where is machine learning coming from? So if the the AI tools are being built on the basis of incomplete knowledge or of

a bias towards those who do not have intellectual disabilities or who are not neurodiverse or do not have that experience of exclusion from society, then there is a risk that the tools themselves can start to perpetuate some of those exclusions. And I think the other thing, and I think this is a reflection for the the sector as a whole within disability, is we're all aware that this is a big developing, looming issue, and yet it's not necessarily

top of our list. It's not our priority. It's not necessarily what we as staff members, for example, have the skills and the expertise in. We know we want to, but how do we develop our own skills as organizations and then as a wider community? And I think that runs a big risk because it has the issue then of sitting in working groups and talking groups, but are we practically developing the skills and the accessibility that allows us to really access and make use of the potential that AI offers. So

I think there's a big gap there around capacity building, not just within, you know, self advocates and and family members, but also within organisations. And I you know, I inclusion international it's a a constant discussion for us is how are we going to start to make use of that and where do we find the capacity and the skills and the resources to do so.

Debra Ruh (14:40)
And how do we collaborate with the others to make sure that what we learn, we're sharing it? Yeah.

Jamie Cooke (14:45)
Absolutely.

Debra Ruh (14:46)
That that's that's one reason why I've noticed y'all, because I like the collaborative effort. I'm gonna ask you a really hard question, Jamie. we talk a lot about corporations here on Access Chat and certainly government policies and stuff, but

What do you think the disability community could do better? What could Inclusion International do to really help corporations get their hands around full inclusion in in every sense of the word that, you know, for our community? Because it still really feels and of course I understand the times and what has happened in these times and the realities that of all of the pressures that have been put on all of this work and all of these people. But

You know, I just think there is such an opportunity for the disability community, especially leaders like, you know, your organization, to work with corporations to really help them understand not only what are our needs, because I think we have done a lot of work telling people what our needs are, but actually what have we done that will, you know, really help you? It's like, I look at you, you gigantic.

A corporate brand with you're in 173 countries and you're doing all this. Well, let us collaborate with you to help you and bring in, you know, 200. I mean, it just feels like the disability community has done a very, very bad job of supporting corporations and other group other sectors that are actually trying to include us, but they get real mixed signals from our community.

so that is a hard question for me.

Jamie Cooke (16:30)
Yeah, absolutely. No, no,

I I it's a very important question and I think it's a a huge opportunity. and a an an opportunity and this is what's crucial is as you touched on there, it's an opportunity for the disability community and who we serve, but it's also an opportunity for corporations as well. You know, there is a talent pool, there is a spending pool, there is a customer base out there that's that's incredible and is is not feeling connected in. I think there's a few aspects to it. One is I think as as a whole,

across across the disability movement and and across the kind of charity movement in in general. I don't think we're really good at knowing how how to talk or how to approach business and and corporations. We are aware, but we maybe start from a basis of either in a lot of cases suspicion, or these, you know, big, bad, evil corporations that are somehow going against the community, as opposed to par potential partners and and collaborators and and people who see that shared value. We

Or we see them as is this somewhere we can get money from? Rather than what do true lasting living collaborations look like? And for me, the the big parts there, and I'm not saying to any anyone who's not listening that we wouldn't welcome sponsorship. Of course, any other cash-strapped organization would. But what is really critical is those long-term partnerships. If we can see working with corporations that members of the intellectual disability community are going into

rewarding quality careers within these organizations, if they're starting to see their lives reflected in the communications and the visual brands of corporations and businesses, if they start to feel that they're part of that rather than something that's not thought about, that's an incredibly powerful agent for change within society. And I think too often we've we've seen the moral case and

Of course, the moral case, the human rights case, the rooting of this and the rights that are are enshrined through the CRPD and other areas is it cannot be taken away. It is the absolute bedrock of what we do. But it's also about the benefits that it brings to both sides there. And I think it's recognising that simply walking in and going, You mu you should be doing this without explaining what that brings and the benefits and how we do it, I I think is critical. I think the other thing is that sometimes we can kind of

Presume that if we if we just say strongly enough you should be doing this, then that's fine businesses will follow. But I also think it's it it's difficult for businesses and corporations to understand what they need to do to bring people in. You know, what is it in terms of adaptations that you might need to make within the community? What are the kind of roles that will work best for people or the training that you need to deliver or the the offers there? So I think it's moving from that short term transactional.

we're having a conference with you be a keynote sponsor to what does it really look like to collaborate together and to fundamentally shift the culture of the corporation and the culture of the community to see those opportunities to link together. Because what I see when I work with people across the globe is there is talent there, there is creativity, there are skills that people will bring to the table.

But just now there's a disconnect in how they're being brought there. So this is something that is of huge benefit to to corporations, but also is of significant, significant benefit to our community.

Antonio Vieira Santos (19:53)
So, Demir, you work for an organization that operates in different regions, different countries, different partners. Are you happy with the data that you have, that you receive from governments, from entities that can help you to do your work? We know that sometimes caregivers can be a number that people don't really know much about there. We know that sometimes countries make changes on their census and suddenly data just disappears.

What is the state of data in order to help you do your work?

Jamie Cooke (20:27)
So overall I would say it's pretty poor. again, disability is quite often an an afterthought, or if it's there, it's certainly not broken down into kind of a wider sense. So, you know, intellectual disabilities, neurodivergence and and other areas there. It does vary from country to country. so actually the US, for example, does have some really long lasting quite l you know, localized level data, which can be incredibly useful.

you know, in my own country of Scotland, we did actually change the census to have you know, one of the most inclusive and and broadest census of I think in any country in the world, and have fantastic resources like the Scottish Learning Disability Observatory at the University of Glasgow, who are really analysing that that data. But in other spaces, it gets left out because it's too difficult or it's too you know, how it's partial so we don't look at it. So I think we have a huge issue around.

the the gaps in data and where we need more of that. And I think it's particularly around that when we can really drill down into, you know, smaller parts of the community or geographic differences or or different parts, different demographics and intersections, as I said earlier. I think the other thing is also, and this is a bit like what we discussed with artificial intelligence, it's about the skills and the resources within organizations as well. So if an organization like mine was to suddenly start being provided with huge amounts of

data, would we have the skills and capacity to be able to utilize that in the best way? It's a new s it's another skill set that I think some of the bigger charities are probably starting to build in a bit more, but for smaller ones like ourselves, you know, that's problematic. Where do you you prioritize and how do you you fund that? I think it's partly where we find so we and ourselves are obviously an international collaboration of of member federations and organizations, but we are also members

in our own right of other global networks. So for example, we're founder members of IDA, which is the International Disability Alliance, a pan disability network. And that sometimes is another space where we can collaborate with IDA as an entity, but also with other member organizations to either pool resources or find ways to access some of that that data. But I think overall we definitely need more and better data and we certainly need the skills and the capacity to be able to utilize it in the best way possible.

Debra Ruh (22:51)
Jamie, d the I you know how I feel on this topic, because you and I have talked about it, but why do you think it's important for the disability community, or do you think it's important for the disability community to really be the best practices that we're showing to corporations? It feels like a lot that we have, as the community said, corporations, y'all need to do this and y'all need to do that. And you and the I do not feel our community.

our organizations have necessarily been the best practices that we could point to to a corporation say, by the way, how would I successfully hire people that have intellectual disabilities or or somebody that's deaf and blind or somebody that right. So I was just curious what your view is on that.

Jamie Cooke (23:37)
no,

it's it's absolutely crucial for for a number of reasons. One is anytime you start to push a message or or drive in that way, if you then don't back it up yourselves, it's very understandable why others would go, Well, it can't be that critical or easy or deliverable if you're not actually doing it yourself. It's it's you know, it it certainly runs the risk of at the very least looking hypocritical, but but worse can actually undermine some of what we're doing. And I think it's but it's also about

To drive some of those changes to go back to what you were saying earlier around, you know, people with Down syndrome being in these positions of of leadership and authority. It's about skill to to get those, you know, to to be in a position. I I'm honoured to be in the position I am. And I'm presuming that part of the reason I was hired was 'cause I was able to show a certain level of experience, skills I had brought from other places, ways of working or projects that I could demonstrate. So I had to have had the the years before that to be able to get to to where I am today. And

I fear that particularly when we as disability organizations do not give those opportunities for development to people within our community, we're also undermining their ability. You know, if a corporation suddenly turns around and goes, Great, we want to hire people, and we go, Yeah, but we've never actually given any of that work experience or leadership experience to our own members, then you know, that becomes a very difficult position to to deliver. And it's something for us, I mean, I would say as a an

You know, we'll we'll look forward to seeing how the analysis comes back in this. But you know, I I feel overall we we try our best to be, you know, we are driven by the the work of people with intellectual disabilities in their families. We have colleagues on my staff team who have intellectual disabilities themselves, likewise in our our governing boards and on our council. But one of the things that really struck us, we I started on the first of August last year and I was really lucky that you know, a few weeks later we had our first in-person World Congress in Sharjah.

The United Arab Airs was an incredible gathering. For me, it couldn't have been a better way to get immersed into the movement. And we really were struck as a movement there that we said, well, look, this is incredible. We've got 600 people from around the world joining, fantastic, and there's leadership opportunities. But A, do we do that enough within our own organization? We certainly could do more. And actually other parts within the community that we also then so particularly people with complex needs, you know, they're not getting opportunities to come to Congress or to participate. So how are we starting to broaden that?

out further. And it really struck me when I when I was being interviewed for this role, one of the parts of the interview I met with the the staff team and one of my colleagues, Tia Nellis, is an incredible self-advocate leader in the US. And she said to me, Jamie, do you think we could get to a position where the executive director or the co-exec director of inclusion international, or the president or co-president of Inclusion International, could be someone with an intellectual disability. And it was such a a perfect way of showing exactly where the priorities should be. And what I said to her was

For me, if we can't imagine that, who else who's going to and and who can we demand that of if we're not willing to to try and make that happen? But also it cannot happen overnight if you're not being tokenistic. That is about building those opportunities for leadership development, for skill development, for experiential development. And I think therefore it's absolutely essential that we as OPDs, as organisations people persons with disabilities, of governmental or non governmental organisations working in the field, that we are showing

How this works and then when we go to corporations we can say, Hey, look, we've we it we've we're there. We can see how difficult bits of it are. We can see the incredible successes. Join us on that journey instead of us just pointing you in a direction to go.

Neil Milliken (27:12)
Yeah, I think that's a very powerful point well made, Jamie. I think that you have to walk the talk, but at the same time, we're seeing in the UK at the moment a terrible backlash against supposed tokenism and academic plagiarism and tinges of

racism and ableism all coming into play with what's happening with one of the Cambridge professorships. So organizations need to build credible pipeline and capacity to then take up those roles so that you don't end up with tokenism because tokenism is bad.

for credibility in general, but it's also bad for the individuals that get elevated into positions that they could be accused of not deserving. It's stressful. It creates resentment in all sorts of ways. So the capacity building, the teaching of skills, the giving of experience is all part of a long-term building of

capability and next generation leadership. So yes, you as an organization, that should absolutely be your long term goal, but we have to recognize that you can't do that instantly. what are some of the things that you put in place to help, say you're employing individuals within your own organization and within some of the others within your umbrella, but what are some of the sort

How do you teach people the skills? Are there particular initiatives that you your members run that teach people those leadership skills? Because they're very different to the skills that are often taught to people with intellectual difficulties, which are sort of how are going to serve in a shop? Because people have that lower level of ambition, unfortunately.

Jamie Cooke (29:26)
Absolutely. Absolutely. No. And I think there's there's a number of ways. So I think part of the issue and where the tokenism aspect can sometimes be raised is when the whole process is solely focused on getting someone in the door. And actually it's about the culture and the long term opportunities there. You know, we don't want people with intellectual disabilities to have jobs. We want people with intellectual disabilities to have rewarding careers. There's a fundamental difference between the two.

And that can be any that can be where is most appropriate and what feels best and works for that person. But it's about therefore building on the the culture. So we we created a resource with Down Syndrome International a few years ago called Listen Include Respect, which is about how do you move beyond easy read to actually truly inclusive communications, truly inclusive organizations. So it's about looking at how this works across the whole place. So how what are some of the barriers that perhaps some of the people are encountering, but also

How does that benefit other people? When actually you make some of these improvements about making communications more accessible or looking at the the kind of working environments, these actually can benefit across your entire staff. And it's because it's seen as a long term rather than, hey, great, we hired one person with a disability, we've ticked that box. This is about how are we going to keep seeing that? So, yes, us as organizations helping to create a pipeline, but also businesses, organizations, public sector.

building on that as well. And I think that the the most powerful part of that is through the doing. So when you see projects, there's a fantastic program in New York City that's run by AHRC in partnership with the City of New York. And they organize internships and placements for people with intellectual disabilities within city government. So here's a a setup of a respected community of a a career where you can have a lifelong career in in this organization. And it's been an incredible piece of work.

there because what they see is success because they prove it. This isn't tokenistic because the people who are coming in and who are then being kicked on in these good careers are there because they're really talented. They're not there because, great, we can say we ticked off whatever percentage or whatever box. They're there because they've been brought in and they've demonstrated that they can do and that they have that that skill set. And I think that's the essential part is

How do we support people through the door? But crucially, how do we build that longevity for them? Move away from this sense of, you know, one off jobs to lifelong careers.

Neil Milliken (31:59)
Excellent. Thank you so much. I need to also thank our friends at Amazon for sponsoring us and helping keep us on air. Jamie, it's been a real pleasure to hear about the work that you're doing with Inclusion International. Thank you so much for joining us today.

Jamie Cooke (32:14)
Thanks for having me on, really appreciate it.

Debra Ruh (32:18)
Jamie, if people wanted to learn more about the organization, where would they go?

Jamie Cooke (32:23)
so they can go to our website, which is www.inclusion international dot org. Sorry, inclusion hyphen international dot org. or can contact me directly as well, which I'm always very happy about.

Neil Milliken (32:38)
Thank you. If you're listening to this and you like the conversation, please do remember to subscribe to the podcast. Because subscriber numbers help push us up the rankings and get more people to be able to see and hear about conversations like this.